I was so nervous. The whole way there, tears were threatening, or falling. Amy was mostly silent, sleeping. At one point she did ask is we were driving all the way to London to see Dr. Hoffinger. It brought much needed laughter. The radio was broken, so I was mostly Read more…
Giant. Ball. Of. Emotion. Today was a visit like any other. I had hoped for good news, but I was prepared for Dr. Hoffinger to tell me nothing had changed. I had hoped that he would give us clearance for a hinge, and I wanted to talk about limitations in Read more…
Wow. One year. It’s astonishing how fast this year has flown. A year ago we were so afraid. “Is it broken?” “Is this the right choice?” “What if it doesn’t work?” “Will it heal?” “What will the outcome be?” So much fear and uncertainty, and yet, here we are. One Read more…
Today, Amy’s little brother had his first NF appointment with his geneticist. Amy tagged along, so that we can start getting their yearly NF appointments synced up. The appointment went well- nothing super surprising. Her brother has NF1 *gasp!* and they need to have their blood pressure and spines checked Read more…
Last night was one of the longest nights in my life. Amy had a terrible night filled with muscle cramps. I feel like I’ve hardly slept, and Lauren is a total zombie. All through the night, the silence was suddenly split by screams that would break your heart. We medicated Read more…
6 months 4 weeks post op (McFarland Bypass done 2/21/18) The incorporation at the top of the graft looks as amazing as the bottom looks awful. ? So, the news is not fantastic. It’s just not healing well at the distal end. ? On the positive side we’ve only been doing bone stimulation for Read more…
Yay! It’s here! They overnighted it to us- very cool. Hopefully now, we can get some better healing at the bottom of her graft. ?? It comes with the device, a charger, the strap, and ultrasound gel. Plus a bunch of reading material. During treatment, no problems, all smiles. A single treatment Read more…
6 months Post-op McFarland Bypass (done 2/21/2018) Looks much the same, nice and straight though! If you look closely, you can see the graft is much less defined, so that is positive! I was a little disappointed to see this x-ray. I was hoping for something far more dramatic, but Read more…
4 months 4 weeks 3 days Post-op McFarland Bypass (done 2/21/2018) Couple things to take note of: 1st, up at the top the graft used to stick out a lot more. Now it’s not. It’s HEALING!!! ??? 2nd- the split in the graft is filling in! 3rd- Damn me if Read more…
Amy had her 1st bath today. She wanted NO PART of it. She fought all the way to the tub, holding her leg out of the water. “I want it dry!” But eventually she got tired and her leg sank into the water. After a bit, she starting playing in Read more…